Rose: our love and our loss

Two weeks ago Rose, who was nearly 9, lost her three-year fight against bone
cancer. Charlotte Allocca, her mother, kept a blog of her brave struggle

'Brave and beautiful': Rose Allocca with her mother Charlotte

By Charlotte Allocca

7:00AM GMT 19 Dec 2010

On 21 March 2008, the Good Friday of a regular family Easter weekend, we took our 10- and six-year-old son and daughter to the aquarium on London’s South Bank. We were just like every other family there.

On our way home, we stopped off at King’s College Hospital’s A&E department to get them to look at a sudden swelling on our daughter Rose’s thigh.

She was immediately diagnosed with high-grade osteosarcoma – a rare and deadly children’s bone cancer. Our almost three-year journey since that day ended earlier this month when we lost our fight to save Rose.

This is her story – or bits of it – which I started to write in a blog (ouramazingrose.blogspot.com) to keep friends and family up to date with her progress,

and ultimately with her deterioration. It has been written with fear, hope, and desperation, in the dark on hospital wards and here at home, in remission and in relapse, and with great love for Our Amazing Rose...

Rose has cancer. I write the words and it still isn't real, eight months in. We are so exhausted now – March feels like lifetimes ago. The last few days shuttling Rose around London from test to test, hospital to hospital, has put a huge strain on us. We need to dig deeper to find the strength to carry on.

I am sick to the stomach of being in hospital. Tonight my head is splitting and I am really homesick – I miss Simon and Felix [Charlotte's husband and son], my life, my privacy, my duvet. I want everything back the way it was.

NOVEMBER 2008

Treatment is nearly finished. Today for the first time we talked about life "after chemo". I'm still too frightened to feel any sense of relief or closure; I can't remember what it feels like not to wake up with a stomach full of dread; can't imagine a future with Rose the way she was; and can't believe there might not be more to come. How will we cope back in a world where every conversation doesn't begin and end with blood results, investigations, transfusions and chemo? We need a crash course in small talk and interesting things that have happened this year.

Our time spent in hospital has been a window on a world we never knew existed, but we know it now and we will never – can never – go back to the way we lived our lives before, whatever the outcome for Rose.

Every monthly check up will, we hope, take us a step further away from all this, a step nearer a cure for Rose – and all the children we have come to know and care about this year – and a small step closer to the life we lived before.

November 20

Treatment finishes. This year Rose has narrowly avoided amputation, has had nine months of chemotherapy and a massive operation – a prosthetic femoral replacement in which metal bones replace the cancer-ridden femur and knee joint.

We go home and learn to live again.

Exactly one year later, in a routine chest X-ray, secondary lung metastases are found in Rose's chest.

November 6 2009

Routine check-up at the Marsden. My guard lowered by 12 months of clear X-rays, I am reasonably relaxed in this morning's clinic. But the child in front of us had long gone and still we waited. Behind the clinic door in our last few minutes of ignorance, when we all still had a future, our consultant was busy making CT and bone scan appointments, with the chest X-ray we hadn't yet seen on the screen in front of her. A perfect little seven-year-old chest – with two metastatic bone tumours sitting in the right lung. Peekaboo. The pantomime villain of cancer is back.

November 9

It's been a bad weekend – there have been two sleepless nights, a tidal wave of tears and anger, and Simon and I are exhausted. It's almost a relief to be with just Rose, back at the Marsden, and doing something – even if it is another scan to see how big the tumours are, how many more there may be elsewhere. I can't even remember what we told her it was for, but she's very cool; she knows the drill. We pack snacks and drinks, her DS game console and iPod, her reading book and Snuffles, and off we go.

I have already decided with Simon that I will try to "read" the bone scan as it happens. But the radiographer is acutely aware, despite my best efforts at nonchalance, that I am watching the screen intently. Rose gets to watch a DVD and lie in a room with Jungle Book characters on the wall, but it doesn't make either of us feel any better. She stays calm until the scanner is almost touching her nose and then starts to cry. A giant sob lodges in my throat and it's suddenly almost too much for us both, but then it's over and we're out.

January 2 2010

New year resolutions:

Live in the moment

Live in the moment

Live in the moment

February 11

Our new surgical hero, this time a thoracic one, has just spent five hours operating on Rose at the Brompton. He has removed two tumours, found no others, and she is in intensive care beginning her recovery. He is upbeat, confident and reassuring. I started the day sobbing uncontrollably over her anaesthetised body and am now elated and euphoric. Rose's tumours are out, and she is drifting in a morphine world cuddling Snuffles.

May 5

The three-month post-op chest X-ray is clear. No recurrence. Simon and I look at one another – is there a chance that this will be the end of it? Ten per cent of metastatic osteosarcoma patients make it past the five-year mark. Someone has to make up that 10 per cent. It's going to be Rose.

In a sudden rush (rare) of optimism and conviction I decide that Rose is going to be OK. She's going to be nine and 10 and 11 and 12, and then she's going to drive me mad because she's a teenager and we're going to argue and fight over clothes and boyfriends and staying out late. And we're going to shop together for another 30 years and I can't wait for all of it.

June 13

Rose has shoulder pain. It won't go away with paracetamol and it is waking her up at night.

June 23

The year breaks down for us all into a lot of memorable dates, and along with the old favourites like Christmas and our birthdays and the-day-the-dog-ate-the-hamster, there are the anniversaries we will never be able to walk away from. Today, June 23, finally the game is up for Rose. Her incurable cancer is already back in her lungs and now also in her shoulder, too. There really isn't an awful lot to say.

July 5

Results from more scans, CT and bone but it's all just blah blah blah. Rose's consultant is in the mood for heroics – she wants more chemo, more surgery, the whole nine yards. We are askance. She's just doing her job but misjudges it badly and is nowhere near where we are. Rose is at school on a trip to the park, and I am meant to be with her, not planning her slow-motion car crash.

It is both children's last week at school before the summer break, and they are so excited about the coming eight weeks. We go through all the motions – induction afternoons with new teachers that one of them will never be taught by; packing up and proudly bringing home their year's work. Rose's school pulls off a new low by requesting that the children fill a memory box to be opened on the last day of next year with photos, letters to themselves and precious things. You literally couldn't make this up.

September 4

Simon and I sit in a meeting with the King's palliative care team and the Marsden outreach pain management team, and talk about Rose's future.

No one mentions the Year 4 syllabus, state versus independent and what options we are considering for secondary. She doesn't have that future any more. Instead they talk about a home visit to assess the house and decide which room to put Rose in. HER ROOM I scream in my head. They talk about commodes, slides to get her in and out of wheelchairs, locked medical "toolboxes" that the community nurses will have codes to, the legal requirement that Rose be seen fortnightly by a doctor because we will have controlled drugs in the house, the fact that Rose's details will be on the 999 system at all times and on and on. Oh my lovely girl, I think to myself, I know you love the limelight but this time I really think you've overdone it.

I drift in and out of the conversation. We are handed leaflets with emergency pain-team phone numbers, hospice newsletters with smiling dying children on the cover, a brochure called When Your Child's Cancer Cannot be Cured (which at no point, surprisingly, suggests putting a pillow over their face and handing yourself in at the local police station) and finally it draws to a close.

We get it. Rose is coming home to die.

November 11

It's all or nothing here. Rose is either asleep or in pain but the pendulum swings further in each direction now – the sleep is longer and deeper, the pain when she wakes more unbearable to watch.

It leaves long periods when she lies there sleeping or zoning out, in varying levels of consciousness, when I am at a loss for what to do for her. I long to scrub her – to wash her hair, her body, to take off her flaky nail varnish, to dress her in clean pyjamas and brush her hair, but she is like a wild animal in pain and won't be touched.

I take ridiculous numbers of photographs of her which I then delete because they are all the same. And anyway they are not Rose and they are not how I want to remember her. I think about Christmas shopping online but shy immediately away from the torture of it. What is to become an annual hurdle is only weeks away but if I ignore it perhaps it will just go away. Where do all the bereaved parents of small children go at Christmas, I wonder?

So what I do instead is I tell her the story of her. Perhaps she can hear me, perhaps I'm talking to myself but I tell her how much we wanted and planned for her, how excited we were, how badly Felix, Daddy and I all wanted a baby girl, a baby sister. I tell her about her birth – she's heard it all before but I tell her really slowly and say all the best bits twice.

I go on and on and tell her all the funny anecdotes she loves, about all the holidays we've had, about nursery and starting school, about learning to swim, to ride her bike, about getting Harvey as a puppy, about the Isle of Wight. Mostly I tell her over and over how fiercely we love her, how desperately and pathetically sorry we are for every minute of the last three years, how insanely proud we are of her.

God, poor child. Not only is she dying and in terrible pain but she's got me banging on and on over her bedside and she can't even get away.

December 2

Snow. Our palliative consultant attempts the journey but is towed ignominiously back to the Marsden 10 minutes in. The community nurses so far have struggled out but there are delayed deliveries at the pharmacy, a daily anxiety that the nurses won't make it and now, finally, civilisation breaks down completely and Ocado cancel our delivery.

I type this watching her little chest heave with the effort of her laboured breathing and listening to her continual background whimper which is all there is now, day and night, and I whisper to her in my head, give it up now my lovely Rose, this is no good. But I am still drowned out by the much louder and more persistent voice in my head saying please, please don't go Rose – I am so much more frightened of life without you than you can possibly be of dying.

Rose Isabella Allocca 27.12.2001- 7.12.2010

The post somehow I never thought I would really write.

Our brave and beautiful Rose died in her sleep in the early hours of this morning with great dignity and finally with great calm. The three of us who had welcomed, cuddled and loved her at her beginning with such great excitement at the promise of her life to come were with her all day today at her end, loving her more than ever. Tonight she has left home for the last time and it was very, very hard to let her go.

Rose was buried in a private ceremony on December 12

* For more information on the Bone Cancer Research Trust, or to make a donation, visit www.bcrt.org.uk